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Ned’s Declassified Isolation Survival Guide

Individuals being isolated isn't a new phenomenon; in fact, it's something that's been going on for years. For many sick and immunocompromised people, isolation is just a necessary part of the recovery process, something that goes on behind closed doors, away from the lives of others.

I'm immunocompromised and have been since birth, but I didn't actually know this until I was 15 years old.

Image supplied by Ned O’Bryan.

Since then, I've been diagnosed with a rare condition (XIAP deficiency, secondary HLH) and had a haploidentical stem cell transplant. In layman's terms, my white blood cells didn't work as they should have.

They filled their designed purpose in fighting infection, however, instead of self-destructing once they'd done their job, they didn't, and I progressively got sicker and sicker. Where a common cold lasts only a few days, in this case, it was a week or more.

Let's rewind the clock back five and a half years, to November of 2014. It was sort of the official start date of my prolonged isolation, not including the month prior when my conditioning started (chemotherapy), where you're essentially killed without being killed.

Oncology patients everywhere have endured the pains of these treatments and faced the harsh realities of confinement all before. To them, one month in your own home, with anything you could ever need, is nothing in comparison.

Following my transplant, I was in isolation for six months. I couldn't spend time with my family in close proximity, I couldn't see my friends, and for an extended period of time, the only place I could go outside was the backyard, a majority of which was taken up by a swimming pool I could not use. Way to rub salt into the wound.

Illustration: Cindy Chen

In telling you my story, I'm not trying to take away from the struggles, difficulties and challenges everyone has faced the past few weeks, and is still facing now. I just want you to know, it's not new, and more importantly, it is possible to survive, staring at the same four walls for an unfathomable amount of time.

With the threat of coronavirus still spreading, I am more vulnerable than most and so was sent home from work for being immunocompromised on the 19th of March this year. At least I got paid for the hour I was at work before I was booted. Since then, I've been in isolation. Six weeks. It is not comparable to the situation I faced five years earlier, but many of the lessons I learnt then, apply now.

Hopefully, by the end of all this, someone will publish a full isolation survival guide, but for now, maybe this impromptu one will suffice.

Three months post transplant, still in isolation, on an exercise bike. (Image: supplied by Ned O’Bryan)

The biggest challenge I faced following my discharge on Christmas Eve back in 2014 was my mental health. It wasn't the constant trips to the hospital; it wasn't constantly feeling horrible; it wasn't the massive port protruding from my chest. I was used to all of those things. They were the most normal, most routine part of the whole process. It's the mental health aspect that can really creep up on you.

It has been well documented; one of the outcomes following our completion of exile is mental health deterioration.

There is not much you can do; you're stuck in the same square meterage. Escape is impossible, but it doesn't mean it's the end of the world.

It's funny, though. We're in isolation, but constantly around family members. We feel separated from our lives, yet we can't seem to find an escape from said family. A quiet place and a quiet time seem impossible yet ever-present. The human psyche is weird.

So what's the best way to survive times like these? How do we get through the remainer of this isolation and any more in the future? I'm no expert, but having been here before, I've got a few tips.

Skype and Zoom have become hot commodities, and so they should be. Aside from melancholy work meetings, I've used the platforms to catch up with friends, play trivia and 'Cards Against Humanity', and even to go clubbing. We've been forced into a new world and socialising, albeit virtually, is key.

Illustration: Cindy Chen

I'm assuming you're reading this article on your phone, right? Most people do, but maybe you should stop.

Your handheld device is your greatest asset and greatest enemy in a time like this. While it is good to stay in touch with your mates, spending every waking moment on it is unhealthy.

Give your device to a parent, put it in the next room, whatever, get rid of it for a bit. You'll be surprised how cathartic it is. Leave the world and all of its worries behind; focus on completing a puzzle, become engrossed in a book, invested in a movie or stupefied by a video game.

Being on your own, separate from your mind, is fantastic. It is one way to escape.

I'd like to take another guess: you're reading this while in bed? Don't get me wrong, beds and mattresses, they're great. Personally, I've been catching up on all the sleep I missed from when I was diagnosed until the end of Year 12 exams. However, your bed should be used for its designed purpose: sleep.

It's important to maintain some form of routine or reality, and your bed is a good way to compromise it. Your bed is in your room and spending extensive time in it, in your room, in the same 25 square metres, just doesn't help you at all.

My final and most important message is this: it's okay to cry. It is healthy to have a BIG cry, to let it all out. In a matter of seconds, the most basic of activities you take for granted can be taken away. For me, this was the case and what put everything into perspective.

I got out of my hospital bed, unplugged my infusion pump and waddled over to the door.

I was about to open the double doors when a nurse rushed over and slammed them shut, screaming at me to stop.

All I wanted to do was walk across to the kitchen, five metres away and get a Chupa Chup.

I couldn't.

The loss of the most basic things is startling, and it's shocking. It can break you, and it is okay if it does.

Breaking shows your humanity.

We will make it.


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